XLH Transitions Toolkit

Transitioning into adulthood for children with XLH can present unique challenges. The Transitions Toolkit can help you manage shifting priorities while navigating changes to day-to-day routines and responsibilities.

A family living with XLH

The XLH Transitions Toolkit is your guide to navigating changes in health and life with XLH

XLHLink transitions toolkit

The XLH Transitions Toolkit is your guide to navigating changes in health and life with XLH

This toolkit is designed to provide information and resources to help young adults with XLH and their parents/caregivers prepare to transition to adult healthcare. It will also spark some thoughts about other parts of adulthood with XLH—from dating to managing mental health.

 

To receive a printed copy of the XLH Transitions Toolkit, please complete the form below.

XLH SELF-CARE ASSESSMENTS

These self-care assessments are designed to help you and your child understand their level of preparedness for taking over their own healthcare as an adult.

XLH assessment, ages 8-11

XLH self-care
assessment (Ages 8 to 11)

Download

XLH assessment, ages 12-14

XLH self-care
assessment (Ages 12 to 14)

Download

XLH assessment, ages 15-18

XLH self-care
assessment (Ages 15 to 18)

Download

XLH assessment, ages 19+

XLH self-care
assessment (Ages 19+)

Download
RESOURCES FOR NAVIGATING TRANSITIONS IN ADULTHOOD

Living with XLH, you may have many questions during important and exciting life transitions. These resources will give you guidance on navigating college, getting your first job, dating and relationships, and taking care of your mental health.

Living with X-linked hypophosphatemia at college

Heading to college

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Navigating a job with X-linked hypophosphatemia

NAVIGATING THE WORKPLACE

Download

Navigating dating & relationships with X-linked hypophosphatemia

DATING AND RELATIONSHIPS

Download

Mental health with living with X-linked hypophosphatemia

ADDRESSING MENTAL HEALTH

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RESOURCES FOR COMMUNICATING WITH MEDICAL PROFESSIONALS
AND UNDERSTANDING HEALTH INSURANCE

Communicating clearly with healthcare professional will help to ensure that you or your loved one receive proper and necessary care. These resources will help you advocate for your health, understand health insurance, and provide guidance for how to get the most out of your doctor’s visits.

Communicating with healthcare providers when you have X-linked hypophosphatemia

COMMUNICATING WITH HEALTHCARE PROVIDERS

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Talking to your doctor about X-linked hypophosphatemia

TALKING TO YOUR DOCTOR ABOUT XLH

Download

Understanding your health insurance and X-linked hypophosphatemia

UNDERSTANDING HEALTH INSURANCE

Download
 

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